An Interview with "No Tube"

What can you tell me about NoTube Organization?

NoTube supports families with children with tube dependency, working with the "Graz model of tube weaning".

We help children who are "stuck" on a feeding tube in absence of a medical need for it. Although the children are able to eat from a physiological point of view, they show signs of oral aversion and food refusal. We help them overcome this obstacle and finally be able to eat orally and sustain their nutritional needs. Furthermore, we help all children with early eating behavior disorders, such as selective eating disorder, infantile anorexia...

Where are you located?

The LLC is located in Switzerland and Austria. We offer online options (so families from all over the world can reach us without the need of travelling long distances, which is a big advantage for medically fragile children) as well as onsite options in different countries all over Europe. Our EAT Campus will be open in April 2016, in Graz, Styria!

Who is on your team?

We have an interdisciplinary team consisting of:

·         Pediatricians (Marguerite Dunitz-Scheer and Prof Scheer have developed the Graz model of tube weaning, they have weaned thousands of children)

·         Psychotherapists,

·         Clinical Psychologists (Sabine and Karoline are also Dr in Medical Sciences and have published a lot on the themes of tube feeding and weaning)

·         Physiotherapist (Eva. who looks back on 25 years of working with children with eating disorders)

·         Music Therapist (Birgit, who is also a social pedagogue and is quite experienced in her work with special needs children) ,

·         Psychosocial counselor

·         Non-medical professionals (marketing, financial department, IT...)

What made you develop an organization for No Tubes?

Our program "Graz model of tube weaning" has been developed and evaluated in the University Children's Hospital of Graz. Due to the increased number of interested families from all over the world, we wanted to offer services in order to help all these families adequately. We are absolutely not against feeding tubes and know that they fulfill a life-sustaining function. But when it comes to the weaning phase, not many professionals are trained and interested, so many children stay stuck on a feeding tube in absence of medical needs for it. These are the children we want to help. As said, we also offer feeding therapy for children with other early eating disorders.

How do you offer help?

Online: 

1. Tube weaning via Netcoaching - treatment via as specialized online platform, standardized protocol of reducing tube feeds, daily contact to our experts including messages, video analysis, weight and intake evaluation. This helps children who are medically fragile as there is no need to travel; furthermore the family saves the whole travel costs and stays home in its familiar environment. Over 90% of all children participating can be weaned completely off their feeding tubes! There is no duration limit, we treat the child until it has reached his/her full potential.
2. "Learn to eat" program - online coaching for children with all kinds of early eating disorders

Onsite:

1. Eating Schools in our EAT Campus in Graz: 2 weeks intensive support onsite by our interdisciplinary team in addition to the Netcoaching!
2. Play picnics: all over Europe, to get in touch with our philosophy and programs, our team members currently travel to different locations in France, Sweden, the Netherlands, Great Britain, Switzerland and are willing to come to other countries if wished.
3. Home visits by our medical experts for children with tube dependency and early eating disorders in order to help the family’s onsite.

Can you give some examples of how you have helped?

We treat children with different underlying medical diagnoses: extreme prematurity or birth complications, heart defects, metabolic diseases, malformations or diseases of gastrointestinal tract, genetic syndromes, psychosomatic/psychiatric diseases, neurological diseases, oncological diseases, renal diseases... who suffer from tube dependency. Furthermore, we work with children with different kinds of eating disorders such as highly selective eating, infantile anorexia, eating disorders in children with autism...

Please have a look at our patient's testimonials: :https://www.notube.com/tube-weaning-success-stories 

How do you think your organization can help children living with FPIES and feeding tubes? Also, how can you help families looking to avoid the necessary placement of a tube?

Before tube placement, we could evaluate the current nutritional state and situation with the doctors onsite and give specialized advice and help with the decision about tube feeding and support children during the phase of tube feeding or to help optimize the nutrition in case a feeding tube can be avoided from a medical point of view. For children who got tube dependent we can help with weaning keeping the special situation of FPIES patients in mind.

This post is a written interview with NoTube and The FPIES Foundation Executive Directors.  

Sitting Down With Kindrd Food

**August 2017 Update:  Kindrdfood has closed its doors. Tara is still seeing patients through video conference, please contact her at taramccarthyrd@gmail.com

A company has emerged to offer help to families who have to manage changes in their diet due to a medical condition or dietary restriction. To our delight, they turn out to have the hard to find expertise in FPIES.

The company, Kindrdfood (www.kindrdfood.com), pronounced “Kindred Food,” offers 1-on-1 guidance from Registered Dietitian’s (RDs) who are individually matched with a family based on the expertise of the RD and the family’s specific dietary restriction or health challenge. Their system has an easy to use video conference system to connect RD to client. One of the best parts of their solution is that they appear to have high quality personalized recipes and meal plans developed with the support of an expert Chef...YUM! 

We wanted to learn more, so we interviewed Co-Founder and Chief Dietitian, Tara McCarthy, MS RD LDN.  Tara is also a Dietitian on The FPIES Foundation Medical Advisory Board. 

How did Kindrdfood come about?

Well, I met my Co-Founders at an innovation “hackathon” (a weekend-long competition) focused on challenges in pediatrics at Children’s Hospital Boston, where I have been a Dietitian for over a decade. We won the hackathon based on a dynamic personalized recipe website for people with dietary restrictions, but we didn’t think that had enough impact on what families really deal with. So, over a few months of strategy work, we felt that the gap in guidance would be the opportunity for us to have the biggest impact on these families. In particular, I have worked with patients who have FPIES and other rare conditions for a long time and it means a lot to me to make sure that our team covers even the most challenging conditions.



To you, what makes Kindrdfood’s solution more effective in general and specifically for clients with FPIES?

Well, certainly the technology helps a lot. It gives clients access to guidance from anywhere and us the ability to offer more convenient availability, including nights and weekends. What means the most for clients though, is that the Kindrd Nutritionist (one of our Registered Dietitians), that is matched with them really knows how to help them with their specific challenges. The way we do this is that our team is made up of experienced and additionally trained Registered Dietitians who have a broad base of knowledge and specialized areas of expertise. We meet weekly to discuss current topics and anonymously review challenging client cases, so we’re constantly evolving and improving. For families managing FPIES, it means having the confidence to trust in their guide, Kindrdfood, and we hope to take a little of the pressure and stress off of their shoulders.

It’s hard for a family managing FPIES to trust that anyone in the culinary world could understand how to handle these limitations, so tell us about this Chef or yours! 

Lauren Deal! She is wonderful! It’s funny, because we are careful to only recruit Dietitians for our team who absolutely love food, so we all love working with Lauren. We’ve taken great care to make sure that Lauren has a very clear understanding of what matters for safety and health of people with FPIES and other conditions, and she helps us learn more about the nuances of flavor and texture when we have to substitute different ingredients to offer people better taste and more variety. Lauren is a mother and a chef, and brings her passion for both food and family to every discussion and every recipe. It’s really a pleasure to have her on out team (you can read more about their leadership team here: http://www.kindrdfood.com/leadership).

What are the most frequent challenges that your clients with FPIES start with? 

There are several specific things, but honestly the number 1, is that they just don’t know where to start. It’s overwhelming for most families. They think about what they don’t know, what they can’t do and emotionally that’s a lot to take in. These are legitimate reactions though. There are limited safe foods, and there are a lot of things to learn. What we try to do is slow things down and start from the top. Give families something to focus on and start with simple information. In my mind, I’m thinking about the main issues that will matter for the family. Limited safe foods, growth challenges and lack of variety are top factors for the family, but behind that I’m thinking about nutrient deficiencies and challenges advancing with textures. What really drives me personally though, is trying to maintain or reintroduce a pleasure in eating. Food is such an important part of life, and should be a joy. We work hard to make sure that is the case. 

What can a client with a newly diagnosed FPIES expect for their future in your experience with help from your team?

Well, I think that it’s important for families to take it step by step as a slow progression when it comes to FPIES, but even if there are breaks in the process, I want clients to believe that they have happy kids in their future. We’ll increase the quantity and variety in their child’s diet, and variety might not mean more foods, but, for example, enjoying potatoes in several different ways. We’ll bring back enjoyment to meals. I try to make sure that they feel that they have a guided path and a partner to trust in their journey. They can trust that I’m going to paying attention to the details of the child’s growth and nutrients. I’ve been lucky enough to have clients who have taken this journey with me and I’ve seen them reach their goals. It’s such a pleasure to receive photos from a client of their child with a huge smile, enjoying a new food. That’s why we do this.

What is the one message that you would offer to families amidst a life change with FPIES? 

Oh, without question, I would say, you will be OK and your child will thrive. While it may take time and you might see positive changes only in small increments, you’ll be OK. 

This post is a written interview with KindrdFood and The FPIES Foundation Executive Directors.  Tara McCarthy has been a valuable member of the Medical Advisory Board of the FPIES Foundation since 2013. 

Feeding Tube Awareness Week 2014

Feeding Tube Awareness Week®, launched in 2011 by the Feeding Tube Awareness Foundation, is a unique opportunity to raise awareness about feeding tubes.  

There are several reasons a child may need a feeding tube.  Food allergies can be one of those reasons and some infants/children living with Food Protein Induced Enterocolitis Syndrome depend on feeding tubes for their nutritional needs.  

What types of feeding tubes are there? There are different types available to meet different children's needs. These include NG Tubes, NJ tube, G-tubes, GJ Tubes and IV Nutrition-- a child's doctor and his/her family will work together to determine which tube is the best fit for the child's situation. For partial nutrition or complete nutrition, from overnight feeds to bolus day time feeds, blenderized diets or elemental diets-- whatever the means or the delivery, the goal is the same: to provide nutrition for optimal growth and development. 

Whether for a family's own education, or to help to educate others and to spread awareness, the Feeding Tube Awareness website has all the information families and their loved ones could need about feeding tubes. Check it out today!

This post was written by the Executive Board of The FPIES Foundation 

Reading Between the Recipes: How to Start Your Cooking Notebook Today!

Cooking with FPIES in mind can be quite an adventure! When using substitutions and often uncommon ingredients, there can be a steep learning curve involved in figuring out how to turn safe ingredients into a variety of interesting dishes and baked goods.

Fear not! Head over to the Cooking and Nutrition section of our website and find resources to help create an FPIES Cooking Notebook, an invaluable resource for all kitchen adventures!

What is a cooking notebook?

A cooking notebook is a type of journal used for keeping track of recipes, notes on specific products or foods, and what cooking methods/recipes have previously worked well (or those that have not worked). This resource can even provide a springboard into creating your own recipes! For individuals learning to cook in a new way not often discussed in commercial cookbooks, the cooking notebook is essential.

Let us take a look at the various tools and outline their uses:

•  Helpful Baking and Cooking Substitutions
• Keep this list handy when altering “traditional” recipes to suit your family's safe foods. Be sure to read the tips and list of additional resources for extra help!
•  Label Reading Tutorial
•  An essential tool in navigating the grocery store aisles when seeing safe ingredients for recipes!
•  Homemade Baby Food
• Crafting recipes for the smallest of gourmands? From cooking techniques to storage tips, this tutorial will be a wonderful stepping stone to getting started.
• Kitchen Equipment to Consider and its Uses
• Need help figuring out what kitchen equipment might be helpful to your cooking endeavors? Consider this list and then tailor it to your needs!
•  Allergy Friendly Cookbooks and Websites
•  Checking out cookbooks and websites targeted at allergy friendly diets can provide inspiration for creating your own recipes or simply provide a venue to seek out safe recipes for your family.
• Produce Washing and Preparation
• Wondering how to remove waxes from produce? This tool has a few options for thorough produce washing and wax removal.
• Quick and Easy Tips: Saving Money on a Food Allergy Diet
• Allergy friendly diets can sometimes drive up the costs of your grocery bills--- these tips can help learn ways to save money.
• Creative Tips for Food Preparation for Various Ages
•  Check out these lists of ideas for ways to help make mealtimes more interesting and appealing for all ages and developmental stages.

Now with these resources in hand, choosing an organizational strategy for keeping the resources together can be helpful.

I personally use a binder that has a combination of notebook style pages and plastic pocket pages that fit two different sizes of recipe cards. It gives me the versatility I need to keep my cooking endeavors organized.

Those who are particularly computer savvy may even want to keep on online cooking notebook, using a combination of organizational sites like Pinterest and self-created documents available for viewing in a database like Google Drive or the Cloud.

Whether using a simple spiral notebook with pockets, a three ring binder, or even a specific cooking notebook from a specialty store, keep one key concept in mind. Learning what structure and tools that will best meet your family's needs is essential to getting the most out of your cooking notebook.

Copyright © 2013, The FPIES Foundation

Post contributed by The FPIES Foundation Executive Board Member, Amanda LeFew. Amanda also blogs about her family's experiences living and cooking with FPIES at Baby B and Our FPIES Test Kitchen. 

Feeding Tube Awareness Week 2013

For some children with multiple food allergies such as Food Protein Induced Enterocolitis Syndrome (FPIES), a feeding tube is a necessary means for getting the optimal nutrition necessary for growth.

The Feeding Tube Awareness Foundation is "dedicated to providing parents and caregivers with the information needed for day-to-day life with a tube fed child." And their goal is "to make what is medically complicated, easier to understand".

In honor of Feeding Tube Awareness Week 2013, The FPIES Foundation would like to share:

• An article about feeding tubes in an FPIES family featured in Complex Child E-Magazine: Overcoming the Small Percentiles: Our Super Tubie.  Complex Child is a "monthly online magazine written by parents of children with special healthcare needs and disabilities.  It is intended to provide medical information, along with personal experiences, in simple language that other parents can understand.  Articles are on a wide variety of topics ranging from basic information on medical conditions and treatments to advice on how to beat insurance company denials."

• About additional resources, from our Resources page, such as: 

The Oley Foundation - "The Oley Foundation is a national, independent, non-profit 501(c)(3) organization that enriches the lives of patients dependent on home intravenous (parenteral ) and tube feeding (enteral ) through education, outreach, and networking. The Foundation also serves as a resource for consumer's families, clinicians and industry representatives, and other interested parties. Programs are directed by the staff and guidance is provided by a board of dedicated professionals and patients."

ThriveRx - "ThriveRx’s mission is to optimize the nutritional well being of our consumers through our customized approach. Our home parenteral and enteral nutrition program is driven by our customers’ needs while maintaining the highest standards in service and clinical management. Quality care that fosters independence and empowers consumers and their families is the fundamental basis from which our business decisions will be made".

Mini Buddy - Mini Buddy provides "[stuffed] animals with feeding tubes to children and adults who have a feeding tube or who will be getting one of their own soon. They are also focused on bringing tube feeding children and their families together".

Tubie Friends- "Tubie Friends a non-profit group that is administered by two mothers whose children have feeding tubes and want to use their experience to make life easier for the thousands of children relying on feeding tubes for their nutrition."

• Our featured Inspiring Family Story: 

Ryker's Story:

On January 5, 2011, our world changed forever. Our youngest of 4, Ryker (6 months old), began vomiting at the babysitters house. Just thinking it was the stomach flu, I called my mom and asked her to go get him. The babysitter called me 10 minutes later and said I needed to get there ASAP, something was wrong with him. I grabbed my stuff and rushed out the door. Within 5 minutes I was running into her house and witnessing a scene I would never forget. My little baby boy had lost all color and was motionless, with the exception of dry heaving. He looked as though he was having a seizure and was not responding to my touch or voice. I quickly called 911 and he was rushed to the ED. The doctor there explained that she did not know what was wrong and he was in shock. They were going to helicopter him to the nearest Children’s Hospital. My heart sunk. We were devastated.

At the hospital, we spent 4 days with no answers. He quickly came back to us and was his usual feisty self. They sent us home with the only instructions of “if he vomits again, go to the nearest ED immediately”. How scary is that!

When I was finally ready to go back to work the next week, I asked the babysitter to not give him the rice cereal, just to stick with breast milk for the time being. I remember her asking if I thought it was the rice cereal that made him sick. I told her I wasn’t sure but something was telling me it was the cereal. She had taken care of a child in the past with FPIES to rice and put me into contact with that mom. I knew immediately that is what he had and we were diagnosed 10 days later.

When we were at the allergist, Ryker tested positive for over 30 foods by skin, patch and serum. We were told to stick to breast milk only for the time being. From January to April, he was doing great but was slowly dropping down on the weight charts. Every food we tried became a big disappointment. Either he would have a reaction or he would refuse to eat it. We finally had him scoped in August and found out that he had Eosinophilic Colitis along with his FPIES.

In October, with no safe foods, we traveled to Chicago to see a specialist at Lurie’s Children’s Hospital. I remember crying all the way home after Dr. Wershil said that Ryker needed a feeding tube to survive. He had dropped off of the charts at this point with no safe foods. He had even had an FPIES reaction to Elecare- a hypoallergenic formula!! We reluctantly agreed and on October 25, 2012, Ryker had his NG tube placed. Within 3 weeks he had gained 2 pounds! We decided to go with the g-tube and had that placed on November 29, 2012.

The g-tube is amazing! It has saved my son’s life. He has gained 4 pounds in the 6 weeks that we started this path. He has added chicken and potato into his diet with no issues and he looks great! My only regret is that we hadn’t done this sooner. My once tiny baby boy now has dimples!! And chubby thighs!! And a double chin!! This makes this momma so happy!!

Life hasn’t been always a walk in the park with the g-tube but the stress of worrying about how much he is eating has been lifted and now we can enjoy our baby boy. The g-tube has been such a blessing for us and it saved our son’s life!

Written by Ryker's mom, Darcy S, to honor Feeding Tube Awareness Week 2013